It is a disease that grips both public and media attention and has become a dominant force in health policy as a result. But is vociferous campaigning over cancer care skewing priorities, asks Emma Dent

Cancer. Few diseases have the connotations of that six-letter word. It conjures up fear, pain and death. Yet it also stands for a disease that is better publicised than any other. Mental illness, stroke, heart disease, dementia - all inflict considerable damage to public health and the NHS purse, but none command the attention cancer does.

Cancer is at the heart of health policy. Few issues can have struck more fear into primary care trust managers in recent years than the repeated legal battles of patients fighting to have their local primary care trust commission a drug - often for a form of cancer - it has deemed too expensive to pay for. Throw top-ups into the mix, along with the perceived status of PCT exception committees as heartless bureaucrats making obscure, private decisions about a patient's last chance of a few more years of life, and you have an emotive and potentially volatile situation.

"Cancer is still seen as a death knell," says NHS Confederation deputy policy director Jo Webber. "And the rational arguments about affording treatments for it can't be separated from some highly emotive arguments. We have to steer a course through that."

But does cancer's position lead to a skewing of healthcare priorities?

"Cancer does skew priorities and there are a number of reasons why it does," says public health consultant Daphne Austin.

"It is a priority and has been stated as one since The Health of the Nation [Department of Health document which set out government health spending priorities from 1992-97] started a huge debate about what should be the top priorities for the NHS. If you look at the networks and national clinical directors that were first established, they relate to these priorities: cancer, cardiovascular disease and mental health. Something has to be a priority, but priorities need to be reviewed."

She continues: "There is something about cancer that people fear more than other diseases. Though one can be of the opinion that there are equally unpleasant diseases, it is a horrible one. People fear the idea of something growing inside you. And culturally it is associated with pain in the way that having heart disease or a neurological condition isn't and people fear a painful death."

And while there are plenty of diseases that cause the sufferer pain or distress and end in a painful death, there are myriad organisations associated with cancer that keep it in the public eye in a way few other diseases are. There are a number of notable champions fighting cancer's corner, not least the passionate and well regarded national clinical director for cancer Mike Richards. And charities, patient groups and the pharmaceutical industry combine to be a formidable force. The pharma industry is often seen as particularly influential.

"The influence of the pharma industry is everywhere," says one priority-setter. "It releases early drug test results before they have been for peer review, thereby exciting interest in potential new drugs before we know they work. And it funds patient groups and legal challenges by patients."

The pharmaceutical industry denies acting as any kind of malign influence. Association of the British Pharmaceutical Industry president Chris Brinsmead says pharma firms typically fund up to 5 per cent of patient group income.

"I think patient groups would be hurt if they thought they were accused of doing [pharma companies'] work for them. I don't think they are doing," he says. "We do have an issue around access to drugs and think the National Institute for Health and Clinical Excellence should be reformed to take into account the concept of need and wider societal value [of patients receiving treatment]."

When it comes to attracting attention, some cancers are more "attractive" - inappropriate as that sounds - than others. Anything that strikes younger rather than older people is deemed more headline-worthy. And cancers that do not appear to be anybody's "fault", such as breast cancer, draw more sympathy than, say, lung cancer, which is seen as directly attributable to smoking.

"A stigma around smoking began in the 1970s and people then began to blame themselves [for getting cancer] if they smoked," says Carsten Timmerman, Wellcome research fellow at Manchester University's centre for the history of science, technology and medicine. "Clinicians say since then it has become harder to get funding for lung cancer research and it is not seen as an attractive specialty by clinicians."

As death rates from cancer have dropped and life expectancies have improved for many forms of the disease, the status of cancer itself is also changing, with many arguing that it should often now be treated as a long term condition.

"[Cancer charity] Macmillan Cancer Support for one now talks about how the landscape has changed to be about supporting people living with cancer rather than dying from it," says Ms Webber. "This skews the position again, as we are now dealing with different groups of people and have to put cancer alongside the other big, debilitating, long term conditions. Some treatments for long term conditions are also in the high cost category and have their own questions around affordability."

Such an argument, though, would seem to ignore the fact that there are still some rare but aggressive cancers with low survival rates and if people do not seek attention for symptoms early, there may be little that can be done.

Dr Austin is also concerned that spending on cancer can be at the expense of other needs, such as palliative care. "Unfortunately some drugs that patients want only extend life by a few months, but funding them takes away funding from other areas, such as palliative care, which is needed in the last few months of life. We need to increase effort on primary interventions rather than on very expensive interventions which eke out the last few months of life."

She adds: "There is also misunderstanding about what individual cancer drugs can and can't do. The NHS is not necessarily very good at communicating what the success rates are or the effects of taking sometimes very toxic drugs."

King's Fund chief economist John Appleby is among those agreeing that more needs to be done in primary care and on prevention.

"Government priorities focused attention and reduced waiting times, but there is little evidence this has changed outcomes as people are still not presenting early enough to their GPs," he says. "We are not looking at prevention solutions: why is there not a pill to stop people smoking?"

Who is to blame?

Commissioning bodies are often as much to blame as anyone for not making their decisions both transparent and public, say commentators. While Ms Webber believes PCTs are far from complacent about the current lack of consistency in setting priorities, the way they make funding decisions varies widely, with some likely to have little evidence to back up what they do.

Even when decisions are made explicit, the public may fail to understand what lies behind them - such as what, for example, makes a PCT decide someone is "exceptional" enough to be considered for a drug it does not routinely allow to be prescribed. A lack of leadership or of a national advocate in the area is pointed to as being unhelpful.

Commentators add that the decisions being made by PCT managers are no different from those being made by clinicians - albeit clinicians make them more privately. However, such decisions can be made public and if the reasons behind them are made clear, patients will understand the arguments around them, says North Yorkshire and York PCT director of public health Peter Brambleby.

"There is often a lack of even basic information in PCTs, but I can't stress how important it is to show where our spend goes. When these issues are set out, people accept that we have priorities we have to pay for [and they] accept money is finite. If we say yes to one thing, we have to say no to something else, but that is often communicated very patchily," he says. Dr Brambleby adds that however difficult it may be to listen to the hubbub of patient views, commissioners should never stop listening. "It is valuable intelligence, however uncomfortable it is to listen to. But a balanced commissioner will seek out the voice of the quiet ones, who are less articulate and less able to be heard."

"PCTs will never be able to please all of the people all of the time," says Chris Ham, professor of health policy and management at Birmingham University's health services management centre. "But they have to make sometimes controversial decisions in a transparent way; to be able to demonstrate they have gone through due process.

"Difficulties are to be expected when you have 152 PCTs making decisions and a lack of expertise in decision making. But this has to change or PCTs will find themselves subject to justifiable criticism."

Dr Austin says she would like to see a director responsible for priority setting in every PCT. "Knowing that some people miss out is familiar to commissioners, but it is a feeling that many people find difficult. Because society has not come to terms with this, PCTs have doubts that they are making the best choices for investing."

With no societal consensus on what health priorities should be and confusion about the decisions PCTs make, managers and patients seem locked in the current unsatisfactory set-up.

"There are two ways of changing the power of cancer lobbyists," says Dr Austin. "One is by having other equally vociferous groups to champion other areas where needs are neglected: children, the elderly, community services, the mentally ill.

"The other is to change the nature of the debate. Every service area, including cancer, has issues we need to address, but without a wider debate it is difficult to be balanced and fair to all. The question is, what is most important?"

Can others learn lessons from the cancer lobby?

One thing everyone agrees about the so-called "cancer lobby" is that it has long been focused and well organised in its aims.

The Cancer Campaigning Group, a coalition of 29 cancer charities supported by a number of pharmaceutical companies and founded in 2002 as a "single voice" for cancer organisations, has been so successful that it is name-checked by other health sectors as a successful model to emulate.

The Cardio and Vascular Coalition, made up of 36 organisations founded in 2007 to develop a strategy for cardiovascular care after the conclusion of the current cardiovascular disease national service framework, says the Cancer Campaigning Group provided "a good, successful model".

"We have met with the group to discuss what works well, such as having an effective public affairs strategy in place. It did a public consultation on what a strategy should include before making recommendations, which we have done as well," says coalition project manager Slade Carter.

Mental Health Foundation chief executive Andrew McCulloch, among others, points to the strong clinical leadership and research strategy in cancer.

"It has a lot of success we can copy from in mental health. The sector has worked on the concept of a good service and has built on the importance of research and development, particularly through the voluntary sector and on the role of service users and carers. There is a lot to learn about how we can articulate what we are doing for service users."

A historical perspective

Some health campaigners compare scenarios they still face today to those faced by people with cancer in the past.

"Twenty or 30 years ago, cancer was still 'the C-word' and a bit of a taboo. We have come a long way since then but it is about time attitudes to mental illness caught up with attitudes to cancer," says Rethink senior policy officer Antonia Borneo.

Dementia is another condition that faces problems similar to those met by cancer in the 1950s, says Alzheimer's Society director of policy and communications Andrew Chidgey.

"When you ask members of the public of any age what their biggest health concern is, cancer comes first, but when you ask those aged over 55, dementia becomes their biggest concern.

"An Audit Office report on dementia made the comparison with the state of cancer services in the 1950s: people are being diagnosed late and when they are diagnosed they are often told there is little they can do or little support that can be offered."

One thing that marks cancer out from other health campaigns is the strength of the patient voice. David Cantor, deputy director of the Office of the National Institutes of Health History in the US says that although doctors frequently refer to the "silent patient" of old, this is something of a myth.

Although he acknowledges health and ill health is now talked about openly in a way that would have been almost unknown to previous generations, as early as the 1950s the US saw the emergence of the 'Reach to Recovery' movement. Set up by a former breast cancer patient appalled by the lack of information available to patients, the group began to recruit volunteers to go into hospitals to talk to patients face to face, getting themselves banned by some doctors in the process.

Such strength of feeling took longer to gain a foothold in the UK but, boosted by societal change, the patient movement and lobby groups alike gained momentum throughout the 1960s and 1970s in both the UK and US before reaching the multiplicity they have today.

"In the early 1970s key articles in the press [about breast cancer] coincided with a wider debate in the medical journals about how much information the patient should be given," says Elizabeth Toon, research associate at Manchester University's centre for the history of science, technology and medicine. "It gradually became more acceptable to be more upfront [about having cancer] and by the 1980s the stage was set for the way things are now. In the last 10 years the expectant patient has appeared and there is now a cultural expectation that if the patient is not demanding information, they are not a 'good' patient."